No telerance to statines. Now started with Ezetimibe.

[HankaTwix]

No telerance to statines. I tried all of them. Now started with Ezetimibe. Do you have some secondary trables with?

[Lowerfield_no_more]

I have taken statins for about 25 years and am now on the maximum dose (80mg Atorvastatin). Fortunately I don't suffer any side effects although I occasionally get cramp, which might be linked. And in addition I have also recently started on Ezetimibe to get my lipids down even further, and so far have not noticed anything unusual so have concluded that I am side effect free on that too.

[HankaTwix in reply to Lowerfield_no_more]

I have taken statins 6 weeks and I was paralysed, I couldn't walk anymore...I had to stop...

[CarolingTeacher in reply to HankaTwix]

Me too! I couldn’t walk anymore from them (tried 2 different ones), so I quit statins cold turkey. After a recent large blockage and subsequent stent in my “widow maker” artery, my heart surgeon took that very seriously and put me on Repatha (or PCSK9)— an injectable. I’ve had no side effects and my levels have dropped to less than half of what they were. I’m happy with the drug…and very relieved to have it.

[tangotese in reply to Lowerfield_no_more]

Hello, there is a trial "Orion-4" going on for the next 5 years regarding inclisiran which lowers bad cholesterol checking if it prevents stroke and heart attacks. Obvoiusly I don't know if I'm getting injected with that or a placebo.

Having had a heart attack, stents then bypss surgery and a stroke when taken off the bypass machine I'm happy to try out anything that might help others. I have survived and as a woman I understand fewer women take part in theses tudies than men so less is known about affeect of all sorts of things on the female population. If you get the opportunity to join a study like this please do help.

[Lowerfield_no_more in reply to tangotese]

Inclisiran has been available on the NHS since late 2021, although there are a number of strict criteria that you have to satisfy before you are offered it. And I was invited to join the Orion 4 programme back in 2019, went through all the vetting, was ready to start then the pandemic got in the way. And when things got back to something achieving normality I found out my local hospital were no longer supporting it so I couldn't rejoin. And, as you say, even though you may get as far as joining the trial you have no idea whether you are receiving the placebo or Inclisiran itself.

[Heyjude31]

Hi, I too can’t tolerate statins and now take Ezetimibe. However, dependent on the scores for your cholesterol you may want to speak to your gp about injections which have little if any side effects. I understand it is not easy to get access to these injections. Though having said that I am on a trial but don’t know whether I get a placebo or not! My nurse mentioned that gps can provide these injections, but I appreciate all Trusts might do things differently. I do hope you feel better soon. I could not walk very well at all on statins. Take care, Judi

[HankaTwix in reply to Heyjude31]

Thanks Judi to share it! In France, they don't give the injections treatement...I hope that Ezetimibe will be a way...Take care, Hana

[Lowerfield_no_more in reply to Heyjude31]

These are the criteria that NICE have laid down to allow Inclisiran to be prescribed

It is recommended if..

- the person has ever had:

acute coronary syndrome (such as myocardial infarction or unstable angina needing hospitalisation)

procedures to help blood flow in the arteries of the heart

coronary heart disease

ischaemic stroke or

peripheral arterial disease, and

- the person has low‑density lipoprotein cholesterol concentrations that are persistently 2.6 mmol/l or more even after they’ve had the highest dose of lipid lowering therapies that they can have. This can be statins with or without other lipid-lowering therapies or just other lipid-lowering therapies if they can’t have statins.

It seems to me that the requirement on LDL is quite onerous. However how this is measured as part of a 'normal' NHS lipid test escapes me since routine lipid tests now only cover total cholesterol and HDL, and LDL is swept up within 'non-HDL' which is the difference between total and HDL. Perhaps someone on here can enlighten me on this.🤔

[Ethel14]

I was also on a trial for injection Inclirisan and was taken off the trial as the Consultant said it would be detrimental for me to get the placebo as I definitely needed the injection, I had my first a month ago with no side effects and have been taking ezetimibe since 2014 with no problems hope this helps.

[Heyjude31 in reply to Ethel14]

I am very glad you managed to get the injection! I hope that I am getting it to as opposed to the placebo. My cholesterol has come down to 3, so I hope so. Take care, Judi

[Survivor1952]

I cannot take Simvastatin or Atorvastatin as I get bad cramps with one and ended up unable to walk with the other.

Now on Rosuvastatin and, 18 weeks in, no side effects so far. I also take ezetimibe.

[Rachmaninov2 in reply to Survivor1952]

Atorvastatin made my already painful feet and legs much worse. The pain was excruciating and walking became a nightmare.

[Heyjude31 in reply to Survivor1952]

I couldn’t walk either on statins. Judi

[Survivor1952]

Atorvastatin had me go, in a matter of weeks, from walking briskly everywhere to having to use two walking sticks and unable to manage much distance at all.

I’m now running 5k a couple of times a week and walking on the others.

As I said Rosuvastatin has, so far, been no issue at all.

[Desktop54]

My hubby is on the injections, has been since he had his HA and diagnosed with HF (2 years). No side affects for him and much easier to manage.

[MountainGoat52]

I had serious issues with Atorvastatin, Simvastatin and Pravastatin, so I was put on Ezetimibe. I had no side effects with Ezetimibe, but it was totally ineffective and didn't reduce my cholesterol one bit. After investigations at the local hospital, I agreed to a trial of Rosuvastatin and after a couple of days settling in with headaches, it all settled down and I now have no issues with it.

Ezetimibe is a medication that is used to enhance the effect of a statin. Why it is prescribed as a standalone medication, I don't know.

[Heyjude31 in reply to MountainGoat52]

Hi, I think it can bring down the ‘bad’ cholesterol so i was told by the doctor. Judi

[MountainGoat52 in reply to Heyjude31]

Hi Judi... tests proved it had zero effect for me. Then again, my GP did declare me to be "a nightmare to medicate". Half of what I've been prescribed has had no effect, most of the remainder are on my blacklist! 😂

[Heyjude31 in reply to MountainGoat52]

Hi Gerald, I think I am a nightmare to medicate too! 🤗🤣Hope you are okay, Jude xx

[MountainGoat52 in reply to Heyjude31]

I'm fine thanks Jude. Just need someone to come and take away my tinnitus, i love the hills and would love to hear the silence. 😯

[Heyjude31 in reply to MountainGoat52]

Oh gosh, I wish that for you too. 🙏

[Lowerfield_no_more in reply to MountainGoat52]

In addition to being used in conjunction with a statin, where it enhances the effect of the statin as you say, Ezetimibe can also be prescribed as a stand-alone medication where a statin cannot be tolerated, with the apparent main objective of lowering LDL levels.

nhs.uk/medicines/ezetimibe/...

heartuk.org.uk/getting-trea...

It is however unfortunate that you gained no benefit from taking it, but good to hear Rosuvastatin works for you. From what I understand Rosuvastatin is the last statin to try due to cost, although there is a table out there (somewhere) which shows that max dose Rosuvastatin is marginally more effective than any other max dose statin.

[MountainGoat52 in reply to Lowerfield_no_more]

I looked at the costs for the various statins and Rosuvastatin didn't seem to be that expensive to me. However, I'm sure costs are higher as my GP never offered it to me... it took the Clinical Pathologists at the local hospital to do that.

[PaddyRedVan]

Hi, I also cannot tolerate statins and have tried atorvastatin, rosuvastatin and now simvastatin. I am also taking ezetimibe. No problems with it at all.

[Miocardial_1]

Hi,

I had problems with statins too. Tried a few different ones but got cramps and fatigue. After my HA I was told by the consultant to try Rosuvastatin. I’ve got on ok with it and no problems. Good luck with Ezetimibe

[HankaTwix]

Thanks to share your story. Rosuvastatin not good for me too...I follow with Ezetimibe, with stars to make me tired and body pains...

[Deejay62]

Hi I recently started ezetimibe because I’m intolerant to Statins, which affected my bones. I haven’t had any problems with it and believe if I was going to, it would of happen by now as it’s been over a month now.

[Bluehope81 in reply to Deejay62]

Please continue to monitor cholesterol levels, Ezetimibe can't be considered a full replacement for Statins, I take Ezetimibe and I have 0 side effects from it, and you rarely see posters complain about the side effects of Ezetimibe, but please monitor your situation.

[Deejay62 in reply to Bluehope81]

My Gp pharmacist is monitoring it in 3 months.

[Wk67 in reply to Deejay62]

Hi, my cholesterol is still high. Tried Simvastatin, atorvastatin, rosuvastatin and pravastatin. All gave me severe muscle aches, and CK levels went to danger level so stopped 10 yrs ago . Now about to try Ezetimibe, but get so many bad side effects from most drugs, wary of trying more. Are there any practical things, eg , losing weight would be good, that can help?

[Deejay62 in reply to Wk67]

Hi Wk67, I lost a lot of weight recently and my bloods are all over the place, in fact it’s worse now than when I had the weight and I don’t know why. Before I struggled a lot with fluid retention now it’s under control most days. All you can do is eat well mostly veg on your plate a little carb and a little meat (non fatty) or fish, I mostly have fish or lean chicken. Cook from scratch. I mainly use my oven and I steam my veg. That’s a healthy diet I’ve been told by a dietitian, also incorporate exercise in your regime. Walking, swimming, gym. But before exercising ask your Gp or cardiologist what’s safe for you to do.

[Wk67 in reply to Deejay62]

👍thanks, do gym, but legs hurt a lot so walking is a pain.

[Deejay62 in reply to Wk67]

Sorry to hear that, but at least you’re still trying by going to the gym, you can’t do any more.

[Nomiskneh]

Hai Hanka, I am taking Atorvastatine for years (80 mg). LDL-Cholesterol quite lower than before, but not stellar. However in combo with Ezetimibe the results are really great (LDL about halved). No (extra) side-effects. Henk.

[Bluehope81]

Ezetimibe can be prescribed by itself, but it often wouldn't be enough on its own to bring your cholesterol levels to a therapeutic level, Ezetimibe/Bempedoic is a good combo or Ezetimibe/Bezofibrate is also a good combo. Statins are a wonderful drug but in a handleful of people they can start to affect the integrity of the myelin sheaths around nerves, which can lead to permanent damage, anyone starting Statins for the first time should look out for this in the first month, as if stopped rapidly the damage can be reversed, I assume this is what happened to you when said you had paralysis, if not can you explain what exactly happened? I am still very much pro statin just people need to be aware of how to start them safely.

[maryduffy]

Hi all, I'm new here and interested to know how long it took those of you who had serious side effects from taking Simvastatin to get back to normal. I'm a healthy and fit 72 year old, still working full-time. I 've had high cholesterol for 30 years but no heart problems and normal blood pressure although there is a history of strokes in my mother's family. Was on Crestor many years ago but only for a short time due to cramps. Six months ago my new GP convinced me to give Simvastatin a try...she said it had fewer side effects than other statins???. I put up with the pain in my legs and the stomach cramps, which got bad after about 4 months and kept getting worse. This past week I've been in agony and taking more painkillers than I should. Eventually came off it 2 days ago. I came across this thread almost by accident. Just hoping I'm not left with longterm side effects ..

[Bananacar]

I was put on Atorvastatin after my aneurysm was diagnosed , I got progressively worse when walking and had a lot of pain in my ribs and back, I put it down to the aneurysm but after reading about Atorvastatin I stopped taking it a month ago, what a difference, the pains in my ribs and back stopped almost immediately and I had less fatigue and slept better. The walking is still difficult but at least I have more energy to cope, I assume it was the statin because nothing else has changed.